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Previously, VHLers lived to about age 52-54. The past several years, we have stretched that number to 75-80. When my Mom died in 1971 she was 29 years old. We've come a long way, baby! Participate in clinical trials, donate tissue when you have surgery - do your part to keep progress moving forward! Let's find a cure!
Keep up with your imaging and appointments. A brain tumor, left unchecked, can cause an aneurysm. A pheochromocytoma that is ignored can potentially cause a stroke. Renal cell carcinoma, if left untreated past 3cm, may metastasize to the lungs, bone, etc. and progress to the point it is untreatable.